When I was diagnosed with testicular cancer at the age of 28, it was 1998 and I was in the midst of my internship training in medicine. I will not forget the pit in my stomach when I found a mass in my testicle, or how I put off fellowship for a year waiting to see if my surveillance routine would steer me towards more therapy, or the stress of having inadequate life insurance with a wife and new family. And despite my medical training, I discovered important knowledge gaps that I shared with patients, providers, and cancer researchers.

Awareness:
I did not know that cancer was and is the #1 natural cause of death among young adults, and I had not considered that we may face unique types of cancer with unique biology compared to other age groups.

Science:
Despite high rates of survival, I did not know that unlike younger and older groups, there has been no real change in the rate of survival since the 1970?s, and that childhood cancer survival rates passed those of young adults during that time. There has been a lack of research efforts aimed at explaining these survival gaps.

Standards:
I learned quickly that I had needs to find support for dealing with cancer as a young adult, from banking sperm to managing finances to finding other patients who had gone through this and could share my concerns and fears. There has been a lack of providers trained or centers structured around the unique needs of young adults (as there are for pediatric or geriatric cancer patients).

A decade later, I have immersed myself in tackling these gaps, through my career as a medical oncologist and director of the Adolescent and Young Adult (AYA) Oncology program at the Knight Cancer Institute at OHSU, and as the medical co-chair of the LIVESTRONG Young Adult Alliance. The Alliance task forces are aligned to strategically address these gaps.

Awareness:
Consider cancer is the message of the Awareness task force. Cancer occurs in young adults, and failing to recognize this simple fact can lead to delays in seeking care or in establishing a diagnosis. The 100+ member organizations of the LIVESTRONG Young Adult Alliance are changing this through efforts such as this National Young Adult Cancer Awareness Week.

Science:
Through the work of Science task force members and a partnership with the National Cancer Institute, the Alliance has published recommendations for stimulating scientific investigation in young adult cancers and this summer will convene a biology workshop to investigate the distinctive biology of AYA breast cancer, colon cancer, and acute lymphoblastic leukemia. Researchers are active in retrospective analysis of existing databases, and the Alliance is establishing six AYA biorepositories within the US to collect and catalog tumor specimens for new studies.

Standards:
With over 100 member organizations in the Alliance, we are in a position to best understand the needs of AYA cancer patients and design the standards of care required to best serve them. The Standards task force has produced a position statement outlining training requirements for health professionals to achieve excellence in the care of young adults with cancer. Efforts are also focused on patients rights and on criteria of AYA cancer centers to establish AYA Oncology standards.

This is a great start and this week we celebrate these efforts. I?m excited to say that the partnerships fostered and works performed within the LIVESTRONG Young Adult Alliance are leading to a transformation in the way we approach all aspects of cancer in young adults. We are an inpatient group, and will continue to boldly move forward with the help and encouragement of the 70,000 young adults who will face a new cancer diagnosis in the US this year.

Back in December of 2007, at age 33, I was diagnosed with a rare form of soft-tissue sarcoma called Malignant Peripheral Nerve Sheath Tumor or (MPNST). It was a complication of the disease that I have called Neurofibromatosis, Type I.

The doctors told me the only “cure” was a radical hemi-pelvectomy. To put it bluntly, they wanted to take my leg, I offered them the finger. They had removed the entire tumor, which is actually how they discovered it, so we took a wait and see approach. Well, 6 months later, we got a scare on the PET scan that looked like it had come back.

Well, after some crying, a lot of soul searching, and even more research, I stumbled upon a couple study that was treating MPNST’s with an agressive combination of chemo and radiation. I showed it to my doctor and they said since I was only at stage 1, I wouldn’t be eligible. However, it inspired my doctor to find a chemo trial that would accept stage 1 patients.

I started that study in January and had my first MRI in March. While I don’t want to get my hopes up too much, the results were very promising. No growth and possibly some necrosis along the border of the mass. And, this chemo is well tolerated. I’m tired, and I have no appetite, but no puking and no hair loss.

Long story short, don’t give up on finding a treatment that will fit your needs and lifestyle. It just might be out there. Thank you Lance, thank you LiveSTRONG, and thank you to all the doctors who are doing the research that will eventually cure this dreaded disease!

Hi,This is my first time posting.My son 20 just got dignosed with testicular cancer(My body cannot even bare to pronounce this word)My son recently had his testicle removed and pathology shows malignant tumor.We have consultate with 2 cancer hospitals and doctors and did further diagnostic testings tumor markers normal no signs of spreading some idication of lynphatic invasion But both doctors had said these are aggresive tumors that spread fast to lymph node .We have been given 3 options 1 abdominal lymphectomy ( this has been highly recommended with both doctors) chemo or wait and watch.This is such a tough decision and all so risky.I have reviewed many stories on this site. As a parent no one wants to see your child go through any pain I wish I could take it away but I can’t. Thoughts and prayers to all Thanks for reading my posting.

Brian

Carmela,

I am a 29 year old and had my testicle removed in October. I cant imagine what you are going through, and i know your son can definitely stay strong and beat this. I wish you nothing but the best and you and your son are in my prayers.